英国纤维肌痛患者的医疗保健服务：两项基于网络的全国性调查（PACFiND 研究）的结果。
UK healthcare services for people with fibromyalgia: results from two web-based national surveys (the PACFiND study).
机构信息
Departments of Rheumatology and Therapies, King's College Hospital NHS Foundation Trust, London, UK.
Aberdeen Centre for Arthritis and Musculoskeletal Health (Epidemiology Group), University of Aberdeen, Aberdeen, UK.
出版信息
BMC Health Serv Res. 2022 Aug 3;22(1):989. doi: 10.1186/s12913-022-08324-4.
BACKGROUND
The UK's "Getting It Right First Time" programme recommends that management of people with fibromyalgia should centre on primary care. However, it remains unclear as to how best to organise health systems to deliver services to optimise patient outcomes.
AIM
To profile UK healthcare services for people with fibromyalgia: provision of National Health Services (NHS) and use of non-NHS services by people with fibromyalgia.
METHODS
Two online open surveys (A and B) incorporating questions about diagnosis, treatment and management of fibromyalgia and gaps in healthcare services were conducted between 11th September 2019 and 3rd February 2020. These were targeted to NHS healthcare professionals consulting with people with fibromyalgia (Survey A) and people ≥16 years diagnosed with fibromyalgia using non-NHS services to manage their condition (Survey B). Descriptive statistics were used to report quantitative data. Thematic analysis was undertaken for qualitative data.
RESULTS
Survey A received 1701 responses from NHS healthcare professionals across the UK. Survey B received 549 responses from people with fibromyalgia. The results show that NHS services for people with fibromyalgia are highly disparate, with few professionals reporting care pathways in their localities. Diagnosing fibromyalgia is variable among NHS healthcare professionals and education and pharmacotherapy are mainstays of NHS treatment and management. The greatest perceived unmet need in healthcare for people with fibromyalgia is a lack of available services. From the pooled qualitative data, three themes were developed: 'a troublesome label', 'a heavy burden' and 'a low priority'. Through the concept of candidacy, these themes provide insight into limited access to healthcare for people with fibromyalgia in the UK.
CONCLUSION
This study highlights problems across the NHS in service provision and access for people with fibromyalgia, including several issues less commonly discussed; potential bias towards people with self-diagnosed fibromyalgia, challenges facing general practitioners seeking involvement of secondary care services for people with fibromyalgia, and a lack of mental health and multidisciplinary holistic services to support those affected. The need for new models of primary and community care that offer timely diagnosis, interventions to support self-management with access to specialist services if needed, is paramount.
背景
英国的“一次做对”计划建议，纤维肌痛患者的管理应集中在初级保健上。然而，如何最好地组织卫生系统提供服务以优化患者的治疗效果仍不清楚。
目的
介绍英国纤维肌痛患者的医疗保健服务：国民保健制度（NHS）的提供情况以及纤维肌痛患者对非 NHS 服务的利用情况。
方法
2019 年 9 月 11 日至 2020 年 2 月 3 日期间，进行了两次在线开放式调查（A 和 B），纳入了关于纤维肌痛的诊断、治疗和管理以及医疗服务空白的问题。这些调查的目标人群是为纤维肌痛患者提供咨询服务的 NHS 医疗保健专业人员（调查 A）和使用非 NHS 服务来管理病情的≥16 岁纤维肌痛患者（调查 B）。使用描述性统计方法报告定量数据。对定性数据进行了主题分析。
结果
调查 A 收到了来自英国各地的 1701 名 NHS 医疗保健专业人员的回复。调查 B 收到了 549 名使用非 NHS 服务来管理其病情的纤维肌痛患者的回复。结果表明，英国 NHS 为纤维肌痛患者提供的服务存在很大差异，很少有专业人员报告其所在地区的护理路径。NHS 医疗保健专业人员对纤维肌痛的诊断各不相同，教育和药物治疗是 NHS 治疗和管理的主要手段。纤维肌痛患者在医疗保健方面最大的未满足需求是缺乏可获得的服务。通过汇总的定性数据，确定了三个主题：“一个麻烦的标签”、“沉重的负担”和“低优先级”。通过候选资格的概念，这些主题深入了解了英国纤维肌痛患者获得医疗保健服务的局限性。
结论
本研究强调了 NHS 在为纤维肌痛患者提供服务和获取服务方面存在的问题，包括一些不太常讨论的问题；对自我诊断为纤维肌痛的患者存在潜在偏见、全科医生在为纤维肌痛患者寻求二级保健服务方面面临的挑战，以及缺乏支持受影响人群的心理健康和多学科整体服务。迫切需要建立新的初级和社区保健模式，提供及时的诊断、支持自我管理的干预措施，并在需要时提供专科服务。
Zotero 插件